The Scoop

My second appointment with the pain management specialist was today and the news was not encouraging..  The primary answer is that in patients that received my chemo this kind of neuropathy can happen.  There is no real predictor for it, no prevention, and really- no effective way to manage the pain.  

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For a lot of people, the neuropathy dissipates or goes away completely.  But for a lot of people- it just doesn’t.  For those that continue to have issues there are few drugs that can work: most are also used as anti-epileptic or seizure medications because the primary issue is over-sensitivity or over-firing of neurons in the affected areas. Gabapentin, which they had me on during chemo worked at first for me, but stopped shortly after my chemo ended.

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The next common drug is the Topamax (or Topiramate which is the generic) that I’m currently taking.  The added benefit of the Topa is that one of the side-effects is often numbing of extremities.  So in addition to quelling the pain of the neuropathy it can numb the areas leading to additional pain relief.  So far, that hasn’t really been the case for me.

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Rather than discard the Topa all together, we’re going to double the dosage and I’m going to see the PMS (pain management specialist) again in 2 months.  If after a month my pain is not being helped, or is continuing to get worse (as it has this past week or so) I’ll email him and we’ll be examining another avenue for relief.

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As far as addressing the pain flares that happen outside of just the usual… 6-8 on the pain scale that I sort of exist at on a regular basis right now, there isn’t really anything they can do.  He wrote for another 2 refills on my hydrocodone even though it isn’t really doing anything, and we discussed moving onto something more serious but there are a few drawbacks.

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If the topa continues to be ineffective there are 2 other drugs we can try, but he is reluctant to do so.  With scrips like the Gaba and the Topa there are neurological side effects (word salad, cognitive disruption, memory issues, brain fog) that have been obnoxious… but that I’ve been able to work around.  With the 2 other drugs- there are some very VERY serious and systemic side effects.  Things like blood toxicity and other scary shit I don’t even remember.  They are essentially last resort treatments.  Before moving onto those he wants me to give serious consideration to participating in the toxin trial.

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The toxin trial :deep breath:.  

The toxin trial actually sounds really promising except for one thing- the time commitment.  It would basically mean missing a month of classes.  (Probably).  It is a double-blind study so there is no guarantee I’d end up getting the medication, however, since the study is not so much a “does it work,” but more “what dosage is most effective” there is an 80% chance of ending up in a group that receives the drug and only a 20% chance of receiving the placebo.

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The drug itself is derived from (get this) fugu. From the brochure, “WEX purifies teh tetrodotoxin from fugu for the use in this trial. [It] is given by injection subcutaneously.”

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And despite my previous assumption it’s not meant to paralyze the nerve cells but rather works to inhibit sodium ions from entering the nerve cell altogether.  The idea is that it reduces the pain signal by keeping the sodium ions from entering the cell altogether.

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It sounds really cool (if it’s not happening to your feet I guess).

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The time commitment problem is that the trial involves 4 phases

1) Screening visit (2 hours)

2) Baseline period (7 days with one visit approximately 2 hours)

3) Treatment (twice daily visits 6-10 hours apart for 4 days each lasting approximately 1-2 hours)

4) Follow up (4 weekly visits of approximately 1-2 hours)

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Now reading it back it sounds like it would only be one WEEK of classes that I’d probably miss, not one month so maybe it’s more manageable than I thought.

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Hmm.

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Either way… it all sounds super complicated in the trial paperwork (right, what clinical trial doesn’t).  But at the same time- I am seriously living at anywhere from a 6-8 on the pain scale right now.  CONSTANTLY.  And that’s without random flares that take me up to a nauseating 9/10.  So, I mean if this could really help…  The trial, by the way, is the main reason he was reluctant to switch me from the hydrocodone to something stronger like oxy.  One of the disqualifiers for the trial is extended release opioids.  He’s not completely opposed if we reach that point, but to keep the trial option open he doesn’t want to take that step yet.

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My primary concerns about this are #1- will my professors work with me if I move forward (I know Jimmy would, and I’m FAIRLY certain Ben would if I sat down and explained and could still get my assignments in… I mean I can always take my laptop with me to UT to do editing while I’m hanging round between injections) and #2- what happens afterwards?

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Because let’s say I do this, and I get lucky and I’m in the group with the dosage and it works like gangbusters.  The study ends and then what?  Do I get to walk out with a prescription?

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Or do I go back to shit that didn’t really work that well at all?

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Dr. M says that the people who have found relief with the blowfish toxin have said it’s a bit like people who have used botox for medical purposes- that it works for a longer-term solution than just a daily pill sort of thing.  

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I don’t know.  I need to know more I think.

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In the meantime, I’d still rather try something that didn’t involve me being back at UT Southwestern Cancer Center 2x a damn day for INJECTIONS.  blargh.

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So after talking to Kris (and I’m going to try and get out to my mum’s on Sunday to talk to her and Memaw) I think probably what I’m going to do is try the increased topa, and also see about doing accupuncture.  Try that for a month.  If I’m still not getting relief, or if my pain continues to get worse- then we’ll see about starting the blowfish trial.

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After that… well- after that I guess we look at the heavy drugs.  

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The tl:dr is basically that for now- I live with the pain.  We try increasing my current med and adding some acupuncture.  If that doesn’t work or help within a month- we possibly try a blowfish toxin trial.  And if that doesn’t do it- then shit gets serious.

The Reason...

honestly though?

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I’m very tired…

I’m tired of being in pain

I’m tired from being in pain

and I’m very

very

lonely.

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Because I don’t know how to tell my real life friends

that the reason I haven’t called

or come out

or gotten together

is because

I can’t really walk

and I’m too tired

and too depressed

to spend energy

on activities and outings

that aren’t absolutely essential.

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but at the same time

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i am so

incredibly

lonely without them all.

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and it all just fucking hurts.

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and i’m so goddamned tired

of hurting.

To Norco... or Not to Norco

I have a really hard time deciding when to take a norco.  

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Like, they don’t really work that well anyway.  And they’re so reluctant to refill them now.  So I try to save them for class when I really need to streamline my focus as painfree as possible.

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But at the same time, it’s really cold, and getting colder.  The pressure is changing because bad weather is coming back in.  So not only are my feet getting worse, but my fingers are starting to ache too.  

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I can’t sleep even though I’m super tired.  Because my feet hurt and we’ve crossed into that… hypersensitivity point where having even my lightest quilt on my feet is too much… but they’re freezing- so NOT having anything on them isn’t really an option either.

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And the whole debate is so depressing that all I really want to do is just swallow a couple capfuls of nyquil and knock myself out and sleep through all of tomorrow so I don’t have to deal with any of this shit. (I won’t go that route, I promise).

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I just… 

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To norco… or not to norco…. that is the question.

The Way it Works

sometimes, when I’m sitting minding my own business and my toes start to tingle, or I’m walking and I can feel my feet start to lose feeling… I look down and just… stare.  

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I pray that today isn’t the day that they don’t come back again.  

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I pray that today is the day that it’s just… a tingle.  That maybe I’m sitting funny, or I stepped weird.  I shift position, I change my gait,  I test the waters.

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But they go numb anyway.  The pain happens anyway.

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And I remember what it was like when I thought all my problems were going to be over when I was done with chemo because that’s the way it’s supposed to work if the chemo works.  

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And then I try not to see the big black cloud behind my head.

Be Better

So we picked up my disability placard today.  

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I keep waiting for this to be less emotional to me, but it’s  just… not.

Giant Red placard to hang from my rearview mirror so that I can be reminded over and over again that my body is not what it once was.  That my life didn’t just… go back to normal after I beat Cancer.

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And maybe that’s the part that’s so hard for me… harder even than accepting the disability itself.  I spent so long with my life disrupted by all of this Cancer business.  I mean, for a YEAR before my diagnosis I was in horrible pain and discomfort.  I had to stop drinking alcohol because my abnormally heavy period meant that any alcohol in my system left me literally flooded.  I stopped seeing friends and family outside of work because by the time I survived my work days (sometimes 10+ hours), my pain had left me with absolutely no energy to go anywhere, much less SEE anyone.

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When I got my diagnosis there was a part of me that was super relieved because I knew I would likely live through it (thankful for Stage 3 rather than Stage 4), and that once everything was all over- I’d finally… FINALLY get my LIFE back.

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And that was always kind of the… light at the end of the tunnel.  When this is all over- I get my LIFE back.  I would get to start moving, and walking, and doing all the physical things that my symptoms had kept me from for so long.  Before I became symptomatic, I’d made huge changes in my diet.  I adjusted how much I was eating, learned to listen to my body’s signals for hunger and fullness.  I switched out much of my fast food intake for fresh fruit/veggies… more salads.  

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I got to a point where I wanted to start … not exercising per se, but walking.  Hiking around the lake with my camera.  Walking downtown.  Pain stopped that for me.  The super-heavy bleeding stopped that. 

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And I just assumed that when I finished with the whole Cancer thing, that I’d be able to DO those things again.  I had plans.  I had ideas.  And that involved being able to WALK.  To walk without help.  To walk without pain.  

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So here I am, almost 3 months after my last Chemo treatment and getting ready to hang my giant red placard in my car.  The one that says I can’t walk 200 feet without stopping.  The one that says I can’t walk without debilitating pain.  The one that says that I beat Cancer and became disabled.  Hopefully… only temporarily.

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But I am having such a hard time with it all in my head.

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Because when I beat Cancer, I was supposed to just be better.  

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full stop.